Archive for September 2014

I want to thank my friend, Rob Snow, founder of Stand Up For Downs and We Need A Sign, and author of the book What I Should Have Said, for taking the time to talk to me. Some who follow my blog may already know this, but for those who don't follow me, I was interviewed by Rob a few months ago. I was his very first guest. If you are looking for my interview on the page I linked, I am # 7 on this list. It was a blast! I am excited that I now get to interview him! He and his funny act will be in Elmhurst, IL, near Chicago, on September 27, and you do not want to miss this!

Diane: Tell me summary about the effort/project you are working on.

Rob:Stand Up For Downs has a mission of enhancing the lives of those with Down syndrome through humor. We produce comedy events around the country to raise money for various DS organizations that fill pretty much our same mission.

Diane: What inspired you to start your project? Rob: Short answer - our son, Henry. I always kind of joke that this is all a very selfish endeavor on our part. The reality is that most charities are started somewhat selfishly, meaning, we are called to it because someone very close to us is affected, and we are looking for a way to help them specifically.

Of course, our hope is that, in helping fund many of these charities, that our son, as well as many, many others will benefit.

Diane: What motivates you to keep going? Rob: Easy answer again is..our son.

But there is another reality... we love that feeling after a successful show. We have a blast, the audience is laughing and telling us how funny it all was, and we managed to raise money and spread awareness. It's such a great feeling to put all that together. Most of these events are pretty time consuming and stressful to put together. We are constantly worried about attendance and covering expenses. And not all have been successful. But when you do the show, and it goes off the right way, it's really a cool feeling.

Then twice a year, our board gets to decide where the money goes. Obviously, we want more money, and want to give to more charities, but when I write that check and send it off, it is a very happy day.

Diane: Tell me a little bit about your family. You can also share about your extended family as well, parents, siblings, grandparents etc who have influenced you. Rob: I was born in Canton, OH and am one of 4 siblings. No I am not the youngest as most people predict, but I do always think I have youngest child syndrome because I was the youngest for 5 very formative years, and was not happy when my little sister took that away from me. My parents and 2 sisters are just about 30 minutes away with 5 other cousins and couldn't be more supportive of us. My wife, Ellen, was born in Wheaton, IL and is the youngest of three siblings. While her two siblings and mother still live in IL, we get to see them often and are all supportive. Ellen's father was an amazing man, who sadly, passed away 5 years ago shorty after Henry was born, but has been the perfect guardian angel for us during this ride.

Our oldest son Charlie will turn 10 in September and is usually the glue of the family. I realized that this year when he went away to camp for a week. We just all seemed lost without him. Whenever I think about him and his role in our family, for some reason I always seem to get something in my eye, and my eyes become very irritated and begin to produce a watery substance. I'm sure it's chlorine or something. In all honesty, when we had Henry, my first positive thought was about Charlie and how he will grow up knowing a different side of life, and hopefully understand those who may appear different, and lack the judgement that is so common in our society. Charlie has never let us down as the older brother, as he is Henry's best friend, and while I'm hesitant to tell him this, he's probably mine as well.

Then we've got our Henry. Born in 2009, and turned 5 in March. Henry is, as most people reading this are probably aware, the greatest thing to happen to our family. He continues to amaze us, inspire us, and make us laugh constantly. From his routine leading of our nightly dinner prayer with "Bless us oh lord, make a sandwich" to his perfect and seemingly constant laughter, we can't get enough. Well, except when we can get enough, which is during his lovely stubborn streaks and tired moments when he growls at us. But those are the fewer and further between times that we definitely do not dwell on.

Diane: What is the joke you tell that gets the biggest laughs? Rob: Ha! Love this question and wish I had a great answer or joke that came to mind immediately. I don't ever really tell jokes, and am actually terrible at it. I know that sounds weird for a comic, but I typically tell bits or stories on stage. Jokes are very hard to do right. But I think the bit that gets the biggest laugh that I can write about in this article and I do in my "We Need A Sign" show is when I talk about how amazing my son Henry is at certain things, like skeeball, the arcade game where you throw the ball and try to get it in the circles, he's amazing, and I don't know what his secret is. Then I show a picture on the slideshow of Henry who has crawled up into the game where he is standing on the circles and throwing a ball in the middle one. It's such a great picture, and as the laughter dies down, I ask if anyone else thinks about a very negligent mother taking this picture

Diane: Do you have a story that has bombed? If so, can you share it with us?Rob: Ha! Another great question. Too many I'm afraid. I've had sets that have bombed. I still remember the third time I ever performed. My day job was booking comics at colleges and I had formed such a good relationship with this one college, that they actually booked me to open for the comic. I thought this was such a big break for me, so not knowing much about comedy and how an opener worked, I prepared about a 30 minute set, which is unheard of for someone's 3rd time ever. I didn't prepare it at the clubs, I memorized it in front of a mirror, so I had no idea what worked and how to time my punchlines. I did the show without forgetting a single line and basically bombed the entire time. I think it helped that I memorized it, because I didn't even really react to bombing and just kept going. The headliner got the biggest laugh when he made fun of how bad I bombed.

****I think the joke I love, but never really gets a laugh is this. A proton and neutron were going to see a movie, and they get a few blocks down the street, and the proton tells the neutron he forgot his wallet and has to go back. The neutron says, "are you sure?". The proton says, "I'm positive". This joke requires a 4th grade science education.

Diane: How did you get started in comedy? Rob: It's an odd career choice, not that's it's my career or ever has been. But I think you get started by being someone who consistently makes your friends and family laugh. Throw in a few class clown awards, and I had a decent amount of confidence that I was funny. One comic told me that only 10% of the people that are told they are very funny should even try stand-up comedy, and from that only 10% might even be remotely successful.

I officially started when I moved to Chicago in 1995 after I graduated from college. I saw a show at Second City Theatre, which was all sketch and improv, and fell in love. Afterward they talked about their classes, and I knew I had to do it. I began working there seating people, washing dishes, and cooking food, but it gave me money to get into the classes. I worked there at an amazing time. Tina Fey, Horatio Sanz, Neil Flynn, and Rachel Dratch, to name a few, were on the stages, and I got to see them, and even hang out with a few of them almost every night. Mostly I just watched and learned. There was an agent who was actually in my class there, and she liked what I did enough that she asked to represent me. She really helped me out and got me several commercials.

I told myself I'd give it a shot for 3 years which is pretty much what I did, performing at Second City, in clubs as an opener, and doing a few commercials, and small plays. But after three years, I began to realize that the rode ahead was so long, and to be honest, my passion for it had gone away. So after 3 years, I just kind of put it all aside and started a new life. Little did I know that after getting the real job, wife, house, kids, etc., that I would find that passion again 10 years later, and start a second journey in the world of comedy.

Diane: Who is your inspiration? Rob: In the comedy world there are quite a few comics I have admired and think are incredible - Eddie Murphy, Brian Regan, Chris Rock, Jerry Seinfeld.

But when I think of inspiration, I think about people who inspire me personally to do the things I'm doing for the charity or for my speaking, or even for what we do for Henry. In the DS community, I am inspired everyday with a new story. I spoke with Patti Saylor at the NDSC conference and she kinda raised the bar for inspiration. To do what she is doing after her son's death and to still have the energy is just incredible. But to see so many necessary groups that started with a mother or father, or a group of parents that saw a need to improve a situation or make something better, is just such a good carrot for me to aspire to. People like Diane Grover (not kissing up!), Michelle Whitten, Andrea Farris Roberts, Nancy Gianni, Joe Meares, Eunice Shriver, and so many others (sorry to not mention them all), saw specific needs and created amazing and succesful organizations to address that need. Hopefully Stand Up For Downs can aspire to what these people before us have created.

Patti Saylor

Diane: What do you hope to be doing five years from now? Rob: I'd really like to still be involved with Stand Up For Downs, and have us bringing in over $1 million each year. I would hope to be directing it still, and finding new ways to bring awareness through our humor. Right now, increasing the money each year is my goal, but we realize we may be able to pivot here and there and create some unique ideas to help spread awareness while we raise money, all while keeping with our humor theme. When I came up with the name, it really just applied to comedy, meaning "stand up comedy" for Down sydrome. I think we have realized that it also means "standing up for Down syndrome", and if we can use that theme as a guiding point we'll be headed in the right direction too.

Diane: If you could have lunch with 5 people, alive or dead, who would you invite and why? (Ha, getting you back!)Rob: You thief! This is my game. But since, I don't ever get it asked of me, I think I'd have to say, Paul Newman, Jon Stewart, Ben Franklin, Angelina Jolie, and Chris Rock. And we'd all be in awe of Paul Newman! It would take many paragraphs to explain each choice, but this would be a rockin' table. And no, I did not add Angelina just to look at, although, that wouldn't hurt.

Diane: Name three things, outside of faith, family, and friends, that are important to you. Rob: Obviously, these three kind of nail most of it. I'm working on this theory called something like "the pillars of people" where who you are is defined by you as a parent, child, sibling, husband, and worker. Those components have always been the biggest parts of your life, but it's the ability to add one or two more items to this that define you which I think bring a fullness to your life. My others would fall into a couple categories. Charity is obviously a big one and is now a huge part of my life. But I think people do themselves a disservice when they don't add something for themselves. It's not selfish, it's necessary. For me, I would put in my comedy or public speaking. The ability to use a gift to not only bring enjoyment to others, but give me some validation of that gift I think is necessary for me. We all need to have that thing for ourselves that brings us joy, or validates one of our talents or gifts. Doesn't matter how big or small, but it does need to make you feel good.

Rob, thank you so much for taking the time to talk to me. I hope a whole lot of folks will come out from the Chicago area to see you! Let's do this again some time! I would love to see where your journey takes you!

Rob wrote a book called What I Should Have Said which shows so many of the comments people should not make to a parent of a special needs child, with 3 "what I should have said" responses. Very funny and a must read for all of us in the special needs community and for so many out there who just keep saying the wrong things.

Rob is giving away 3 books to the first 3 people who message him at his WNAS page with their best/worst "what I should have said moment".

Hello from ME and me!

I am a mom to 5 beautiful people. My youngest, affectionately called ME, also known as MaryEllen, has Down syndrome. I founded the International Down Syndrome Coalition in 2008 for families new to the diagnosis of Down syndrome and share with others the innate dignity of all. In 2014, I took a break from advocacy. In 2015 I founded Dreamers Merchants Coffee company, a company that works to create an inclusive environment for individuals of all abilities. Welcome to my Dream!